I had a busy week planned. On Monday, I was going to meet with Marianne to discuss teaching a creative writing class together. Tuesday I’d spend writing a new blog entry and doing research for my next writing assignment. Wednesday evening was my writers’ group. Thursday would be the day I started exercising again. Friday I was slated to have lunch with my good friend Martha and afternoon coffee with another friend.

I didn’t make it to a single appointment—even to my desk in the room next to my bedroom.

I slept fourteen or sixteen hours every day this week. Yet each time I awoke feeling exhausted. It’s dispiriting to sleep more than half your life and then not even feel rested. When I wasn’t sleeping, I was still stuck in bed. My unholy trinity of neurosarcoidosis symptoms—vertigo, headache, and periodic blindness—kept me horizontal. I couldn’t even manage to get out of bed to join Jay and Andrew for dinner. It’s lonely, boring, frustrating, and crazy-making to be sick and tired…and not see an end to it.

There are good reasons I’m feeling punky. I just returned from a 12-day, 2,000-mile road trip with Jay and Andrew to Portland, Billings, and Roundup. Jay had work obligations in Portland and Billings, and I was happy to use these as an excuse for a family vacation. I knew the trip would take its toll, but hadn’t anticipated just how thoroughly it would thrash me. My trip to Iceland in February hadn’t wasted me like this. Maybe the difference was the two nasty infections—one in my sinuses, the other an abdominal abscess—I just finished fighting. Or maybe I’m not able to bounce back from my monthly infusion of a chemotherapy drug called Rituxan.

This is life in Chronic Town—casting around for an explanation of why you feel so shitty.

But that’s not what I want to write about today. I want to write about scheduling on the edge of the abyss, or what it’s like to try for a normal life in Chronic Town. In some ways it would be easier if I felt uniformly poorly every day—not that I’m asking for this fate. But if I knew I’d feel crummy, I wouldn’t try so hard. I wouldn’t keep making plans in the hope that I’ll feel well enough to make an appointment. I’m too stubborn to give in to sarcoidosis and to stop trying to live as normal a life as I can. I won’t give up trying to work. I won’t give up my friends. I won’t give up my family. So I schedule as if I’m absolutely going to feel well enough to plan out a writing class, come up with words for an article, have the pep to listen to the details of my friends’ lives. I don’t keep accurate enough records to assess how often I fall short of the very ambitious goals I set for myself in my calendar. Do I make it 50 percent of the time? Probably not.

I’m lucky to have friends who understand that any date they make with me is likely to get canceled, shortened, or postponed. At least, I hope they understand. I’ve never wanted to address the issue because that would mean acknowledging the reality that my ambitions and hopes outstrip my capacity—that I can’t keep up with myself. Looking them in the eye—and saying “You know, it’s likely I’ll flake on our lunch date/writing group/dinner because I’m too sick and too tired to be able to make this. Are you OK that I’m hoping for the best case scenario in terms of my energy and symptoms, but odds are that we’ll have to reschedule?”—would mean accepting this dynamic within myself. And I’m just not ready to do that. It’s the elephant (in drag, balanced on a rolling pin, dancing the polka) in the room.

I guess my overly-ambitious scheduling is a way for me to keep intact some of my denial of how much sickness has changed and limited me. If I make my calendar look like an approximation of a normal freelance writer’s, doesn’t that mean I’m still an approximation of a normal freelance writer? I’ve had to let go of a lot already. I’ve tried graciously to stop thinking of myself as an athlete. I’ve accepted that I need help in the house and help caring for my son. I can’t quite make myself stop believing that I am a woman with appointment to keep and people to see. What would be left of me if I were to wipe my calendar clean? A more accurate question is, who would I be?

It would be easier in many ways to stop trying so hard. It causes me stress and anxiety every time I realize that I won’t be able to drive across town to see Marianne or pull myself together to see Martha. I hate being a flake. I hate cancelling, inconveniencing others, inflicting my woes on the world. If I bit the proverbial bullet and assessed realistically how much energy I have to share with the world, I’d feel less guilty. If I weren’t dragging a heavy sledge of guilt at having to cancel meetings, would I feel better? Quite possibly.

But there’s another variable to the equation. It’s in that seemingly simple statement “if I assessed realistically how much energy….” How much energy I have changes from week to week, from day to day, from hour to hour, and sometimes even from minute to minute. There are some days when I should feel flattened by fatigue or sickness, and yet, I magically have the stamina to do more. Then there are weeks like this one, when I’ve done nothing but sleep and rest, and I still can’t summon the energy to brush my teeth. There’s neither rhyme nor reason to the difference. I’ve tired myself out trying to divine some kind of correlations to my wildly fluctuating energy levels, some pattern in the chaotic warp and woof of chronic illness. There are obvious flags—if I don’t sleep, if I really overdo it, it’s pretty clear why I bottom out afterwards. But then there are weeks like this one, when I should be feeling better by Wednesday or Thursday, and I don’t.

If I were giving advice to a friend, I’d still counsel her to keep track of when she’s feeling peppy enough to make an appointment and when she’s unable to get out of bed. “Isn’t it better to know?” I’d ask her. “Then you can make realistic goals for yourself and not feel disappointed every time you have to break a date.” True, true. And yet, I really don’t want to know just how little energy I have on a given day. While it’s more chaotic to plan as if I’m going to feel well—and then fall short—by doing so, I can avoid the awful realization that I’m too sick to live even a pared-down normal life.

The reality is that we all schedule on the edge of the abyss. We live and plan as if—as if there will be a tomorrow, as if we’ll be well enough to notice it, as if we’ll be loved, as if we’ll have work, as if the sun will greet us in the East and the stars will shine in the night sky. We all scratch out lives in the midst of terrible chaos and constant change. We write “to do lists” in the face of war, rising seas, rampaging disease, and storms on the horizon. Can we have it any other way? Giving into the chaos, instead of living in spite of it, won’t abate it.

I’m not ready to give sarcoidosis my calendar. Some day—and I hope not soon—I’ll have no choice but to keep my days empty. But I won’t cede my tomorrows yet. I’m going to keep planning as if I’ll have strength and energy to spare, if not tomorrow, then maybe the day after. It’s all I can do.

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5 Comments

SharonMVsaid,

Hey, it’s May 21 and the world is still here – keep planning!! The abyss will swallow you sometimes, but it’s not predictable. I think your friends do understand – if they didn’t, they’d be long gone by now. I learned this from bitter experience. I think it’s wonderful that you are able to plan a calendar and be able to keep some of your plans. It’s been a relatively short time since you’ve been able to work & travel again. You are still learning & dreaming. I think if it becomes a burden to you or depresses you that you can’t keep with your plans, then it is time to cut back a little, prioritize more, enjoy each day & activity (which you seem to do). Maybe not cut back, but slow down – slow down the pace but not the meaning & enjoyment.

I’m sorry for the bad week, but I’m so happy to hear what you’ve been able to do, how you have taken back so many facets of your life.

Mariannesaid,

Wow. I’ve never seen anyone write something about themselves with this disease that matched my daily/weekly/yearly life since getting this stupid disease. You are really a great writer I wish I were one as well but alas, another one of my many downfalls. Thank you so much for taking a piece of your limited time and energy to memorialize your thoughts. Keep up the good work! Kind regards, Jay